Stacey Cohen-Maitre did not set out to write a book about the incredible road trip she took with her disabled son along the Pacific Coast of Southern California. But after looking through her journal, she realized there were many incredible anecdotes to share and lessons to pass on to other families facing similar challenges.
And so she has given us Asher and Stacey’s Magnificent Road Trip: An Unconditional Love Story, a heartwarming book about the bond between mother and son that brings up issues from many realms of experience — physical, mental and spiritual. Read our full review here.
The author took us deeper into her life, her book and its many messages.
Q: Why did you write this book?
A: I wanted to share my journey about raising my multiply handicapped son, Asher, and let the world know that yes, it has been extremely challenging and at times, heartbreaking; however, there have been so many life-changing, touching, hilarious and healing moments that I truly felt the need to share it beyond our extraordinarily special relationship.
Q: You are a neuropsychologist specializing in the assessment of children with neurodevelopmental disabilities. What kind of message do you hope to offer families dealing with a family member with disabilities similar to Asher?
A: I totally get the devastation that parents experience when they learn their child is not going to be the child they had originally imagined. After my initial shock and giving myself “a few moments” to grieve, I rolled up my sleeves and went to work to help him reach his potential. Every day I tell myself Asher is not just about his disabilities. He is much more than his disabilities, and I choose to see him as a “whole” person.
Q: What personal lessons have you learned from parenting Asher?
A: The lessons start with my developing a huge amount of patience. It might take him a few seconds to say “yeah,” or 20 seconds to move his hand to pick up something, or a while for me to feed him dinner, or take him several years to learn how to do something that people often take for granted. I’ve also learned to be more accepting, not only of Asher and his limitations, but of the limitations of others as well as my own. “Accept, accept, accept” is something that I constantly say to myself because sometimes that’s all I can do in a given moment. I feel that acceptance is the greatest gift that you can give someone including yourself.
Q: How did you manage to strike a balance between telling a beautiful, emotional story while also informing the reader about disabilities?
A: I was aware that most readers would probably not want to be depressed while reading an entire book. I wanted the reader to feel what I feel, not just the heartbreak but also the joy and unconditional love that I share with Asher. Moreover, this is what I have heard from many people who have read it: they not only experienced a lot of laughter and some very poignant moments but it inspired hope for humanity.
Q: Describe the most difficult challenges you faced with taking care of Asher along the journey.
A: Moving Asher all by myself (on the road trip with a little help from hotel personnel to get him on the hotel bed) and without my better half, Mark, was physically and emotionally challenging. Helping him go to the bathroom in a public place and at the various hotels as well as showering him was challenging because I did it by myself even though it is really a two-person endeavor. The other part was my emotional reprocessing of our history together, which occurs at various times throughout the road trip including in my dreams and daydreams. The road trip also inspired me to finally imagine what our souls would be like beyond this life, in a dimension where there are no disabilities or pain, emotional and physical, and where we are beautiful energies intertwined for all of eternity.
Q: It sounds like your journey increased the great bond between you and your son. Is it even possible to say this journey strengthened your relationship and love with your son?
A: Before the road trip, I could not have imagined that we would have become even closer than we were already. I mean, I can look at Asher’s face and his body language or hear his non-word sounds and know precisely what he is feeling and thinking. However, the road trip did bring us closer in a more spiritual sense. Getting through something challenging with someone and coming out of it as a better and more evolved person can make your soul come alive.
Q: What can you say about what you think Asher experienced and took away from the trip?
A: Asher probably took away that “Mom is totally a rock star” because I indulged him in his favorite pastimes: riding and staring at as many elevators as we possibly could, eating French fries at most meals, riding in the car with the windows down and feeling those sweet Pacific Ocean breezes while listening to our favorite music, and our funny back-and-forth banter. Asher and I know that this trip bonded us even more deeply, and I know that he knows it was a super fun adventure that he got to experience with his eternally and fiercely devoted mom and no one else!